Follow the leader
The untapped power of lived experience should be our go to for mental health advocacy and systems redesign
I remember one of the first times I used Airbnb when traveling. It was a little unnerving this whole “staying in someone else’s house” thing, but I kept with it and found it to be quite an enjoyable experience. What helped mitigate some of my anxiety was the fact that others, just like me, had already stayed at this home and left pretty detailed feedback on the website. I could see the good, bad, and ugly about this property, and knew going in what to expect. Others had left me guidance, which helped me from beginning to end.
There are thousands of examples of where I lean into others’ experience in my life. Since the internet became the internet, or the backbone for how we get most of our information, there have been people giving opinions about everything in life. For better or worse, we lean into these opinions often deciding what we do, what we order, read, or where we travel, based on what others have experienced. It’s a powerful platform that is hugely influential on entire generations.
I can’t think of many examples in life where we don’t modify or change what we do based on others feedback. Health care, remains a rare exception. Sure, there are surveys, advisory councils, and online portals that allow us to weigh in on our experience, but rarely are these data used, advice taken, or information leveraged to help change some aspect of health care delivery. Health care is something that all of us will encounter, much more so than Airbnb, yet interestingly enough, our feedback or score on an Airbnb stay is likely to make more of an impact on what that home does than our complaints do on our health care experience. Seems strange right?
We all have different types of engagement in health care. Some of us have spent far too long trying to get help in the system. Some of us have watched our loved ones languish in these systems trying to get they care they desperately need. Why are our voices, those with first hand experience, not used more to make things better?
The concept of lived experience, especially in the mental health space, has been around for a while. One definition, which I like, refers to lived experience as “representation and understanding of an individual’s human experiences, choices, and options and how those factors influence one’s perception of knowledge.” Of course, all experience is lived, that’s what makes it unique; it’s our truth based on our subjective interpretation of what we went through. And it matters a lot. Or at least it should.
There are a lot of reasons incorporating lived experiences isn’t done as much as it should be in our constant effort to redesign mental health. Sure, the value of lived experience in shaping mental health perspectives is growing, but there remains significant hurdles preventing individuals with lived experience from being fully integrated at multiple levels of decision making. Whether its our perceptions and attitudes towards mental health, which remain deeply influenced by societal, cultural, and environmental factors, or the ongoing and persistent stereotypes and insensitivities that contribute to stigma, discrimination, and human rights violations, we keep mental health, especially those with firsthand experience, at arms length. And despite the profound evidence against many of these beliefs, there remains persistent and inaccurate beliefs that associate mental health conditions with violence, madness, and incompetence, which only add to this hesitancy.
But things are changing.
Recently, Lancet Psychiatry, a global and quite well respected peer reviewer journal wrote a piece announcing how researchers would be asked how those with lived experience were involved in their research. This means, no matter how famous the researcher, the institution, the journal has put more weight on finding out how those actually using the system or the interventions, were involved in the process.
“Lived experience perspectives are important for all research related to physical and mental health, helping to set priorities to ensure that the needs of people with particular conditions are being met adequately. They are perhaps especially important in mental health research, where biomarkers are often not the most relevant measure of conditions that by their nature affect the experience of self, mood, thought, distress, and interpersonal connection. Psychiatry has an uncomfortable history of ethical transgressions and damaging power dynamics in which people have been coerced, experimented on, and targeted by eugenic practices, and coercive practices continue today; this history heightens the urgency of listening to people’s experiences connected to mental health or ill health and to redressing the balance of power in the creation of knowledge, health-care practices, and policy.”
This is a wonderful signal to the rest of the mental health field that we should be doing more with those who have lived experience, and involving them from beginning to end in the work. After all, they likely have the best ideas on solutions and how to reform a broken system since they have navigated it first hand. There’s a few considerations we should consider when better integrating the lived experience perspective in our work.
Be proactive: Reaching out early and often to engage those with lived experience should be a standard for any service forward organization. Recognizing that each person's journey through the health care system is unique allows us new and exciting perspectives giving us a more comprehensive understanding of the challenges and successes within the system. We should create platforms for meaningful dialogue where feedback is not only welcomed but actively sought and valued.
Be ready to go in a new direction: I think about design a lot. I watch workflows in random places. Even as I write this, I see inefficiencies in my local coffee shop. How we set systems up, from simple to complex, matters a lot. Bringing in those with lived experience and having their take can contribute to more patient-centered and effective solutions. However, we must ensure that these perspectives are not only heard but actively considered in shaping policies and practices. If we’re not ready to do some what’s being said or recommended, well, that’s just creating a culture of inauthenticity within our organizations. We say we want feedback but we are not willing to do anything about it isn’t a bumper sticker you want for your organization. Remember, there are times when feedback is going to be hard to hear! Lean into that and be bold in how you respond to what’s likely a pretty significant issue that needs to be addressed.
Be wary of tokenism: Beware the allure of tokenism when embracing individuals with lived experiences; it's not enough to merely sprinkle a few diverse faces into the mix for optics. True inclusion demands active engagement, equal empowerment, and genuine respect for the wealth of perspectives that come with firsthand encounters in our systems. Let's not reduce these voices to mere checkboxes or superficial placeholders; instead, let's ensure their participation is substantive, with opportunities for meaningful contributions, acknowledgment of their expertise, and ongoing involvement. At its worst, tokenism is a major disservice to the richness of experience these individuals bring.
When in doubt, consider using some of the wonderful tools out there to help assess how involved people are in the process e.g., Hart’s Ladder of Participation.
In the labyrinth of mental health reform, where policies are drafted, interventions are prescribed, and decisions are made behind closed doors, a crucial voice often remains unheard—the voice of those who have navigated the system's complex twists and turns firsthand. We’ve got to change this.
Welcome to a paradigm shift—a call to embrace those who have walked through corridors many of us haven’t and emerged with a wisdom that textbooks cannot impart. It's time for us to readjust the power imbalance and bring forward more individuals with lived experience. Who knows, it may be you?
February 14, 2024 will be 5 years since we lost our 15 year-old to suicide. I have walked that corridor and will for the rest of my life. Walking that corridor I have found some doors welcoming and others that don't open, my experience as a father and survivor has challenged me to sometimes push that door open. It is critical that we advocate and redesign the system of care, what we are doing is failing our children, we need to listen to them, value what they have to say and put our egos aside to make those paradigm shifts in approach. When a child loses hope and thinks suicide is the answer, we have failed them. Something needs to change and I am the voice of my child.